Spontaneous EM or POI and fertility

The health practitioners we interviewed emphasised the importance of offering women referrals to fertility specialists soon after a diagnosis of EM is made. Several also noted that they offer women referrals for psychological support due to the significant impact of EM on fertility, relationships and identity (see Psychological therapies and support for early menopause). As general practitioner Dr Ee explained, ‘the most common difficulty for [women diagnosed with EM] is the end of their fertility and some of them might never have had children…’ Dr G, a clinical psychologist, added: ‘there’s all the grief … around not being able to have children, [it] is a very personal thing that you might not necessarily want to divulge to everybody.’

In endocrinologist Dr W’s experience, it is important to discuss fertility with women diagnosed with EM during the first consultation.

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I always ask if they have children or they want children and what their timeframe on that is and what their understanding is of their fertility. And I routinely suggest people speak to a fertility specialist so that they can get fully assessed at least know what the options are and what the likelihood of success is. Because if they’re looking at, for example, an egg donor, then they might need some time to find someone who will be prepared to donate it.

I always provide it as an option to see an actual fertility specialist if they want to, particularly if they’re in their late 30s, because it’s so hard for women to get pregnant at that age anyway I sort of try and push it a bit.

Even if the – and often the discussion is, you know, they go to the fertility expert to have a chat about the various options and what’s actually involved. Often it’s a good discussion for them to kind of make the decision in their own mind that, no, they don’t want to do that. And sometimes when I refer them they don’t really want fertility treatment but they’re ambivalent and they’re not sure and they – they need to have a sort of good discussion about what’s involved, what the chances are of things and then they can sort of deal with that issue. Because I think sort of the worst thing would be to kind of have it all get forgotten and then all of a sudden you don’t have any children and you really wanted them.

Professor Kulkarni, a psychiatrist specialised in women’s mental health, discussed the ‘grief’ that some women can experience in relation to the loss of fertility due to EM.

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With the women who have early menopause we have a whole other range of grief issues that need to be dealt with, and the grief issues, particularly are accentuated in the women who haven’t had children and who have not decided they never wanted to have children. So it’s that group that really experience quite profound depression related to grief, and then complicated by hormone shifts, so you’ve got a double big issue to deal with there. And of course, the psychotherapy in terms of grief loss work is a different sort of psychotherapy to something else.

Health practitioners spoke of the need for care and sensitivity when explaining the impact of EM on fertility to women diagnosed with spontaneous EM or POI. As Dr Baber, an obstetrician-gynaecologist, explained, ‘some of them will conceive spontaneously. The trouble is we don’t know who they will be … I send them to my fertility colleagues … it gives them a chance to go away, consider the things that I have said, get a second opinion, talk about what sort of options are available.’

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A lot of these young women I see, they go in and out. So, they’ll have a good month and a bad two months, and a good month and a bad two months.

Yes.

So, it’s a moveable – it’s very important, and I think a lot of the women I see, they’ve had this diagnosis made after one blood test, and – you have to be really, really sort of monitoring – and, I guess in my situation, it’s easy to do that. I’m set up well to do that, but these women that come in and they want to have fertility – they’ve got infertility and they’ve been told they’re in early menopause and they’ve got to go and use donor eggs, I mean, that’s when we begin a whole different level of evaluation and trying to sort of get some ovarian activity back again. So, I guess that’s part – that’s a big part of what I do.

I have to say, it’s a very, very traumatic time and I always say that I think there is evidence that their ovarian function is extremely fragile, and it may not, at this point, be possible to get good eggs, but that usually – usually, not always – let’s say often, there are opportunities that it’s not a permanent situation, and we just need to be really patient. We have some strategies that we try to stimulate ovarian activity, and that we’re going to try all those strategies, and if nothing works, then we can sit and wait for a little while, and then there are other options.

For obstetrician-gynaecologist Dr C, it is important to be cautious when discussing infertility with women diagnosed with spontaneous EM or POI.

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I think it’s just always dangerous to tell anyone that they’re completely infertile unless either we’ve proven it over a very long amount of time, or their ovaries have been removed. It’s really hard to say to anyone. I mean, I’ve seen a lady recently who did have ovarian failure in her late 30s when a very sad event happened to her, and she went into shock basically, ovaries turned off. And then I’ve just met her recently and it’s 15 years later and her ovaries have come back, and she’s in her early 50s. … It’s like one of those truths of life, like your ovaries, if they’re there they can probably work if they want to, so that’s when you have to be very careful with people that they don’t assume anything. … So, I think it’s just a matter of reminding people that it can happen. If they want it to it’s good, if they don’t, it’s not always good.

A few health practitioners remarked that while adolescent women, for example under the age of 18, may not need an immediate referral to fertility specialist, it is important to begin discussing fertility options early. Dr D, an endocrinologist, commented, ‘you can’t really talk to a 16 year old about fertility … you do need to just plant the seed that fertility will be looked at along the way.’

Health practitioners commented that the impact of loss of fertility on women can vary according to their individual circumstances, including prior knowledge of EM, whether they are in a relationship, and whether they already have children (see Personal and emotional impact of early menopause on women ).

Dr D, an endocrinologist, explained that the impact of fertility loss depends on different factors in women’s personal life.

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It really depends on the personality of the woman, her psychology, her supports, if she’s single, where she’s at. It will really depend. It’s not usually the symptoms, because you can get those easily controlled. Some are grieving for loss of what they expected I think, or an unwanted diagnosis. Some are grieving for their future. Some will definitely be very upset about fertility prospects.

I think most are upset that they didn’t know it was coming, and they didn’t expect it, and it wasn’t something on their radar. Some are really knowledgeable, and “Oh mum had a menopause at 40 and I thought this might happen to me too.” Some almost expect it and are not worried about it – it will really depend on psychology and where they are at and what they expected and what their wishes for the future were.

Dr Ee, a general practitioner, offered her thoughts on how the impact of fertility loss can vary between women.

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It’s not necessarily a negative experience for all women. I mean, I certainly had one woman who was very happily single and knew that she didn’t want children and in a way, having that diagnosis I think really liberated her from the thought of, ‘Should I have children or not?’ because the decision was already made for her and she was very happy to go on Hormone Replacement Therapy and that helped her symptoms and she always said to me when I saw her after that she was really happy and it had been quite a positive thing for her….

I think a lot of women who go through the menopause are adapting to the change in life in general so it’s not – I guess it’s not necessarily specific to women with early menopause. I think all women, when you talk about the menopause with them, it’s a real milestone for them, you know, it’s the end of an era, I think, that you have to work through with them and see how they feel and some are relieved and some find it really difficult, yeah, and I guess it’s a perception as well of being feminine too. I think there is a feeling that there’s a loss of that sometimes with some women.

Medically-induced EM and fertility

Health practitioners emphasised the importance of early referrals to fertility specialists for women diagnosed with medical conditions that can affect their fertility, for example endometriosis and certain cancers.

Obstetrician-gynaecologist Dr C reflected on the ‘pressure’ that women with medically-induced EM can experience.

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I’ve got another group of women who have a type of cervical abnormality, which is not the normal cervical cancer type prelude, it’s a glandular type.

The current treatment is eventually, when they’re finished all their babies, to have a hysterectomy so they don’t get cancer, and it puts a lot of pressure on them for their whole 20s and 30s. “Hurry up, have your kids. Hurry up and have your kids,” whether or not that was what you actually wanted to do in the first place. So it’s a very interesting long-term problem that some people have because it changes their life plan. It means they have pressure on them.

Or even bad endometriosis. You know, “Hurry up and go have babies.” What if they didn’t really want to do it this week with this person? It’s tricky, I reckon, because it must change the way they look at everything.

Several health practitioners shared their experiences of collaborating with different specialists to ensure that women diagnosed with cancer have access to fertility preservation services if they wish to (see Referrals and coordination of care for early menopause). Fertility specialist Dr K explained: ‘we will negotiate with their oncologist for enough time … we can take ovarian tissue, and then we can also … try and protect [their] ovaries during the chemo … we’ll negotiate with [oncologists] on the patient’s behalf…’

Ms Lewis, a breast care nurse, noted that the impact of fertility related to EM after cancer treatment is ‘a loss that [women] have to grieve’. She added that women diagnosed with cancer may react to fertility loss differently depending on whether they have children: ‘if they [have] completed their families and it’s not possible for them to have more children then I think that’s easier for them to accept than if they haven’t had a child.’ (see Personal and emotional impact of early menopause on women)

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Fertility of course – if we induce menopause, especially when we have younger women, fertility is a huge issue and having children, so that is one reason why women might want to come off these drugs or not go on them in the first place. It’s a tough one.

So, we are very upfront about the fact that if you are in your 30s – but not perhaps not so much in your 20s and we don’t see that many women in their 20s, but we do see a lot of women in their 30s – we would talk about fertility preservation with any woman who does not have children and who wishes to have children. Tragically for some women the diagnosis of breast cancer means that even the thought of children goes out of the window and even though some of them regret it later on they are just not in the frame of mind to think about children and family when they are battling a new diagnosis.

We would routinely send people for fertility preservation if that is what they wish. Certain women will not, they will just want to go ahead with treatment and will just want to do that and forget about family, but some women will take on the offer of ovarian stimulation, egg preservation. Of course, that delays chemotherapy sometimes by three or four weeks for some women and even if you reassure women that for most women that’s fine, some women find that a great mental toll.

Breast surgeon Dr Baker explained the options for fertility preservation for women according to their age and cancer diagnosis.

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One of the things that is a mandatory discussion as far as I’m concerned is in any woman really 45 or under that we have the conversation about “Have you finished your family, is there any possibility that you’d want to have more family?” and if so, we offer a pre-emptive discussion with a fertility specialist for fertility preservation. So in the old days, that was either goserelin as a protective for ovarian potential in the long-term. Hyperstimulation – now in the ER negative patient, I was comfortable with hyperstimulation, in the ER positive, I’m not so comfortable.

I think the hardest conversation is the 45 year old, with no partner and no children who still hasn’t given up the idea that they’re going to have a family. So that – that’s, you know, that can be really crushing for them. Because you have to say, look, at 45 they’re most likely to go in a permanent menopause with chemotherapy. At 25 they’re most likely they won’t, 45 they’re most likely they will, whatever I do. And, you know, the pregnancy rates from freezing eggs is low – with embryos it’s much better. And the other thing of course is ovarian harvesting and freezing with subsequent pregnancies after reimplantation.

So, I mean, you need to have the conversation early, you need to time it so that if there’s going to be an intervention it’s after the surgery and before the chemotherapy so that you don’t delay anything.

Barriers to accessing fertility services

The costs of fertility services such as in vitro fertilisation (IVF), and the difficulties that women living in regional areas can experience when accessing fertility specialists, was noted by a few health practitioners. Breast surgeon Dr Baker who worked in a metropolitan centre said: ‘The IVF program … [has] financial barriers.’ She added that she sometimes sees women living in regional areas who ‘haven’t been offered … goserelin for ovarian protection [and] haven’t had a discussion [with their oncologists] and it just needs to be standard for younger women.’

Endocrinologist Dr D discussed the cost of IVF and the need to work closely with fertility specialists.

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So I will refer off to a fertility specialist and usually they are someone with IVF expertise as well, and usually I’ll probably have them on hormone therapy rather than the pill, and then – and again there will be a long wait and cost associated with seeing those people too, and the public clinics are limited in terms of what they can do and time. Because time is – and time is of the essence, really, ladies they want to get on to treatment because it might be a very long road of treatment with IVF.

Then there’s things like donor pregnancy et cetera, that are very sensitive and difficult topics to talk about and I leave that for the fertility specialist to talk about.